DHA Advocacy Day 2011: Part II
Wednesday morning, we all met for breakfast before breaking into smaller groups to head off to Capitol Hill. I was lucky enough to have Dane Christiansen and Selena LaPorte from DHA in my group, as well as FGIMD expert Dr. Brennan Spiegel. Dane, Selena and Dr. Spiegel were kind enough to let me pick their brains all day, so I came away with a bunch of bonus info about FGIMD research and advocacy.
We started on the Senate side, where our group visited the offices of Senators Durbin (IL), Kirk (IL), Boxer (CA) and Schumer (NY). After lunch, we headed over to the House side and met with the offices of six congressmen and congresswomen from New York, California and Illinois, including my local representative, Kathy Hochul (NY-26).
Because we were so well prepared, it wasn’t nearly as nerve-wracking as it sounds. For the most part, the visits went very well and the staffers we talked with seemed to be interested. The Enterra Therapy issue seemed especially well-received since addressing the problem doesn’t require any kind of funding. I’m anxious to see if anything comes of that.
Overall, simply having the opportunity to tell my story, educate people about gastroparesis, and ask for the support and funding that we need in order to cure this condition was an empowering experience. In fact, after talking with Dr. Spiegel all day, I can’t think of anything else that’s more important for me to be doing in the grand scheme of things. Consider this:
- Because of the lack of funding, there are very few new researchers going into the field of FGIMDs.
- Established researchers are leaving the field in favor of better funded areas.
- The reason we don’t know much about FGIMDs has less to do with science than with money.
- Whether a cure is found in 5 years or 25 years will basically come down to funding.
Let me repeat that: the major roadblock to finding a cure for gastroparesis is lack of funding — not lack of ability. What’s more, adequate funding will be essential in order to translate whatever scientific discoveries are made into practical applications that will affect the treatment that you and I receive. This is both good news and bad news. The bad news is that right now FGIMDs are terribly underfunded. The good news is that we can do something about it.
I’ll be posting more in the coming weeks about how you can get involved in the advocacy effort. My biggest take away from Advocacy Day was that if we all speak up with a unified message, we can affect the future of gastroparesis treatment and bring about a cure.
4 Responses to “DHA Advocacy Day 2011: Part II”
Leave a Reply